Charlie Cookson ‘loved to bounce, had a lot of curly hair and said a lot with his eyes.’ Having battled with a number of illnesses affecting his muscles, bones, blood and respiratory system, as well as being diagnosed with epilepsy, a further sickness began to afflict Charlie which, despite a number of tests, his doctors could not identify. He was just over two years old when he sadly passed away in October 2013. Now in its third year, the Charlie Cookson Foundation aims to provide funding for the families of other children with life-limiting illnesses and will hold its annual charity fundraising night at Sunderland AFC’s Stadium of Light on 29 October.
Before having Charlie, Sarah was working a full time job while running a dance school in the evenings. Husband Chris was working full-time at John Lewis. However, once their baby arrived, it quickly became apparent that he was going to need extensive, round-the-clock care. Chris took two years gardening leave, before returning to work one day a week. Sarah was unable to return to her daytime job and saw the time she was able to dedicate to her dance school drop severely, all of which impacted negatively upon the family’s finances. This, on top of the immense emotional strain that caring for a child with a life-limiting illness was putting on the family.
‘It’s very, very hard,’ Sarah tells us of dealing with a situation like the one she and her husband found themselves in. ‘Your child is always first, but in the background you’ve got all these other worries: the mortgage needs to be paid or the gas needs to be paid for. Also, not a lot of people know that when you have a child in hospital, only one parent is allowed to stay overnight with them. So we were travelling back and forth to the hospital with petrol and parking to pay for, then you’ve got to buy your meals and so on, so there’s a lot of expense.’
The positive response from the community, meanwhile, began to flourish. To try and help make their home more accessible for Charlie, various community fundraising events had been arranged in South Shields, with a party to
take place on Halloween 2013. Unfortunately, Charlie died shortly before that date, and so a decision needed to be made as to whether it would go ahead.
‘We decided we were going to do it and we knew exactly what we needed to do with the money,’ says Sarah, ‘from that moment, the Charlie Cookson Foundation was born.’ What they decided to do with the money – over £4000 was raised from that first event – was ensure the families of other children with life-limiting illnesses received the financial support necessary to alleviate some of the money worries that add to the unimaginable strain. ‘We need to make sure the families are secure so they can care for their child,’ she says. ‘They need to have the choice to take three months off work on sick-leave, but know their bills are paid.
‘The need for the support is huge because everybody is in the same place,’ explains Sarah. ‘It might be a different kind of financial trouble, but anyone who cares for a child with a life-limiting illness is struggling so we have to make sure the support is going to the right families.’ This screening is done through a rigorous, time-consuming process, but, to date, the Charlie Cookson Foundation has helped 32 families across Britain and Ireland and has no intention of stopping there. ‘We’ve just secured a shop in South Shields and are looking to bring on staff to help us and the volunteers,’ Sarah beams. ‘We’ve also got our Glitz and Glam event in Sunderland in October.’
On 29 October at the Stadium of Light – the third anniversary of Charlie’s passing – ticket-holders will be treated to a night of food, entertainment, and surprises. ‘I don’t want to say too much; I want to keep it for the night,’ Sarah teases. The event promises to be a huge success with tickets priced at £25 each or £400 for a corporate table of 10.
The Charlie Cookson Foundation is going from strength to strength, ensuring that deserving families get that extra bit of vital support, but it would not be possible without the public’s generous support and, of course, the brave little boy who started it all. ‘People seem to really feel a connection with it,’ Sarah says. ‘We call that the Charlie Effect.’
For more information on the Charlie Cookson Foundation, to help or donate, visit www.charliecookson.org.uk